Hey, there. I’m Missy. I became a special needs mom at the same time I became a mom, so it’s taken me the better part of a decade to wrap my brain around this crazy journey. Even still, most days, I have no idea what the heck I’m doing. But, I have picked up a little wisdom, a little humor, and a lot of love along the way. I created this space to be able to share openly about the struggles I encounter parenting a child with special needs along with my other two neurotypical boys, my quest to find just the slightest shred of good in all situations, and the love that always finds a way of showing up when I least expect it.
When my daughter, Sienna, was diagnosed with Smith-Magenis Syndrome, a rare and challenging disorder, I felt alone and terrified. It seemed that no one could possibly relate to what I was going through. However, the more I share openly about my journey, the more often I come across others who seem to be living parallel lives. It is through my struggle with the isolation that comes from being a special needs parent that I use this space to create a new community based on empathy and understanding. As special needs parents, we learned long ago that our idea of a “perfect” life must be redefined in order to thrive in this role. We are rewriting a new life filled with lots of imperfections and rare moments of perfect. My greatest hope is that you will find some comfort and a safe space here knowing that, in whatever feeling you are feeling about the turn your life has taken, you are never alone.
In addition to writing and being a full time mom, I also serve as President of the SMS Research Foundation, a nonprofit organization I co-founded in 2010 with another SMS mom and friend, Jennifer Iannuzzi. Our focus is on funding research for Smith-Magenis Syndrome with the goal of finding answers and possible treatments that will improve the lives of individuals living with SMS and their families.
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